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Transplant Caregiver Advice: Got Tips to Share?
In October 2016, my now-husband had a kidney transplant. In fact, we met at a kidney disease support group! We were barely starting a relationship, and there was a lot yet to learn about each other. After his transplant I had to learn how to deal with numerous follow-up appointments and accompanying labwork, plus his changes in attitude and lifestyle after many years on dialysis. To go from a very active person to staying quiet and not on-the-go all the time during recovery, was difficult for him. To suddenly have what seemed to be a pharmacy-in-a-box was brand new and challenging to manage. I accompanied him to all appointments and kept detailed notes. I asked a lot of questions, and asked for answers to be repeated in "laymen's terms" so we could be certain we understood clearly.
I wish I had better known that each transplant is different, due to different circumstances, and each person being individual in their approach, reactions, etc. Doctors can speak in generalities, but I needed to learn about my husband's particular case. The tips I would offer another caregiver are:
– Learn to ask questions.
– Keep a journal. It was a valuable tool for us.
What would you like to tell to the caregiver whose loved one is on the transplant list? What advice do you have for fellow transplant caregivers? What do you wish you had known?
Ginger
+++++MODERATOR'S NOTE+++++
The tips shared in this discussion helped to create this article written for the Mayo Clinic transplant blog. Knowledge for caregivers by caregivers and beyond Mayo Clinic Connect.
– What to Expect as a Transplant Caregiver https://connect.mayoclinic.org/blog/transplant/newsfeed-post/what-to-expect-as-a-transplant-caregiver/
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@saratodd Well, I sure don’t know much about transplants, but I do have some tips about children and new events. My son was 3 and we moved from 1 state to another (my husband was in the army) and I was 9 months pregnant. We had to unpack our belongings and set up the house and make sure the 3 yr old wasn’t forgotten. The one thing we did was to buy a toy that the new baby could give to his older brother. This helped him feel important and not forgotten during this crazy time. (Both boys remember this 46 years later)
Your 2 yr old may act out unless she can be a part of everything that happens. Think of fun ways she can help. Maybe a friend can concentrate just on your daughter while you rest. I’ll think of some more . What an exciting time!!
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3 ReactionsAs you likely know, the tips shared in this discussion helped to create this article written for the Mayo Clinic transplant blog.
– What to Expect as a Transplant Caregiver https://connect.mayoclinic.org/blog/transplant/newsfeed-post/what-to-expect-as-a-transplant-caregiver/
Recently, the Transplant Life Foundation (https://www.transplantlifefoundation.org/) asked permission to reprint the article in their publication. Now your collective knowledge for caregivers by caregivers is helping caregivers beyond Mayo Clinic Connect. You can see the reprinted article in the attached PDF.
Thank you @gingerw @debbief @rosemarya's husband, @gaylea1 @genocurt @keggebraaten @tasher3433 @nkdonahue
WhatToExpect as a Transplant Caregiver (WhatToExpect-as-a-Transplant-Caregiver.pdf)
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6 ReactionsMy husband is 7 months out from a liver and double lung transplant. There is so much emotion and guilt that I feel as his caregiver.
He had major complications and needed a trach, feeding tube and had icu delirium.
He had to learn how to eat, sit, walk, etc
He had the trach and feeding tube removed before discharge from rehab.
He is doing well with exception of tiredness, some anxiety and depression.
I retired from my nursing career recently and just feel burned out
Anyone else experiencing this?
He is doing pretty well at home
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3 Reactions@npoynter23 Welcome to Mayo Clinic Connect! This is a great place for you, especially in these difficult times. I must say, I admire you for what you have done! You are one strong woman! And, also as a nurse, I know it wasn’t easy. Did you have any help during this time? Any help now?
You’ll need to wait a day or so for members to chime in and let you know what worked for them. So, let me ask you a question. If you could think of one thing you would like to do for yourself, what would it be? Who would be available for your husband? Just think of all your options and make a plan! Let me know!
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1 ReactionI am currently scheduled to go to Arizona for a week the end of the month with friends
Our family will be available for my husband as needed
It’s been much tougher than I thought, but so thankful to our donor
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4 Reactions@npoynter23 I am so glad that you’re going to take the trip to Arizona!! It will be so good for you and I’m sure your husband will be in good hands! Where will you be going? Do you have any special plans of what you want to see?
I will
Be staying in Apache junction
It will be a very relaxing week
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1 ReactionHi, @npoynter23. I'm a liver and kidney recipient, and I want to congratulate you and your husband for his double lung and liver transplant. I know how much a caregiver does for us recipients and I woud like to say that please, do not feel any guilt. You, do deserve a break! I am thrilled that you are taking a break.
Your husband's tiredness, anxiety and depression that you mentined are normal after transplant. Daily naps are helpfull and possibly a necessity. If you haven't done so, have husband talk to the transplant team about the anxiety and depression, they could be related to the strong medications.
@npoynter23 - What is something that you wish you had known before your husband's transplant that might have made you role as a caregiver easier for you?
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1 ReactionThe icu delirium was something I never heard of before his surgery.
It was horrific watching him go through it. Things that he saw and thought were real was horrible. I wish I word of been warn of this.
Thank you for your kind words and congratulations on your new life!
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3 ReactionsI agree! When the nurses said it is very common and to be expected, like I was not expecting that at all. It is very hard to watch and I imagine terrifying for the patient to go through. I think it should definitely be talked about more. Luckily it is a temporary condition.
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3 Reactions